Sharing of Data Leads to Progress on Alzheimer’s Disease - Part 1

A project was initiated in the year 2003 when the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined hands in a joint endeavor to find the biomarkers that reveal the progress and evolution of Alzheimer’s disease in the human brain. It was a unique project in the annals of medical research and it is yielding results now, which are evident in a deluge of research papers on the subject.

Early diagnosis of Alzheimer’s is being done with PET scans and spinal fluid analysis and more than 100 drug studies are in progress to find formulations that might slow down or even cure the disease. This remarkable collaborative effort is showing the way for more such projects and a similar one has begun for Parkinson’s disease. The Michael J. Fox Foundation has sponsored a $40 million study to find the biological markers for Parkinson’s disease that will enlist 600 subjects in Europe and the USA.

The project has generated great excitement among the research fraternity as the agreement to share all data and make all findings public was something unheard of in the scientific world. Anybody with a computer anywhere can access all the data and go through the findings of all the research studies on the subject. The objective was not just to raise funds, or do research but share all the facts and figures and everything going on in the project on a global scale. There would be no ownership or patent of the data or the research finding and everything would be in the public domain. Private pharmaceutical companies would of course benefit in the long run from the drug formulations or imaging tests that were being developed during the project.

Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania is stunned by the amazing scope of the project. It is a project that is unique and path-breaking in scientific research, according to him. But it is the only way to do it, as unless we kept aside our egos and intellectual property issues, the task of finding the biomarkers for these diseases would be an impossible one, he says. It does not mean that a person having the biomarkers would definitely get the disease, but that is also part of the project. The study aims to find those biomarkers that herald the onset of the degenerative disease.

The Alzheimer ’s disease Neuro-imaging Initiative or ADNI came about during a normal conversation about 10 years ago. Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging was being driven to the airport in Indianapolis by Dr. William Potter who was himself a neuroscientist at Eli Lilly. Dr. Potter was seriously thinking about the ways to hasten the progress of the drug research on Alzheimer’s. He wanted to come out of the typical drug development syndrome of the 19^th century, where a drug was administered and then everyone waited around for it to work. He felt that there must be some other method, where one could view the brain as Alzheimer’s developed and then formulate drugs to halt that development. There were efforts to locate biomarkers, but there was not much progress as different scientists in many different parts of the world were doing their own studies in their universities and with their own patients. They were obviously coming up with different results due to this.

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